By Anja Christoffersen
At 28 weeks of pregnancy, my parents found out I had a life-threatening condition that malformed most bodily systems.
Devastated, my parents began a search for answers. There was no cause identified and no certainty that I would survive. The only thing that was definite was I would need immediate surgical intervention.
Only 1 in 10,000-40,000 babies have VACTERL, and I was one of them. I was affected by all conditions except limb abnormalities, including malformation of my vertebrae, digestive, respiratory, urinary and reproductive systems as well as a hole in my heart. One of these conditions alone would be enough to have a detrimental affect on someone else’s life.
My parents searched for an adult with my condition that was living a full and happy life despite their disability. They were unable to find anyone as some of the conditions were so taboo that people would keep it hidden.
My surgeons, doctors, family and medical team could not provide any guide of what lay ahead for me.
They understood how different the outcome for each child would be however this didn’t stop them from wanting to find a happy ‘VACTERL’ story.
I aim to portray my story in a way that is both realistic and true to my struggles, but it also true to my successes and joys. I live my life without being defined by my disability.
I was lucky to be diagnosed early, so the doctors could prepare for my arrival. They were uncertain of the severity of my condition however were able to get a good team together in preparation for my birth. My conditions were as follows:
(V)ertebral: Hemivertebra (half formed vertebra), extra lumbar vertebrae, congenital scoliosis, missing bones in sacrum including tail bone (this can affect the amount of nerves and feeling in the pelvic area)
(A)nal Atresia: I had ‘cloaca‘ which is where the vagina, urethra and intestines are fused and come out as one opening. This is one of the more complex abnormalities. In my case it was fused high up (high confluence cloaca) making it more complicated, and I had duplicated reproductive organs (2 vaginas, 2 uteri, 2 cervices, 2 ovaries).
(T)rachael-O(e)sophageol Fistula: I had oesophageol atresia (missing foodpipe) -from my throat it joined directly to my lungs meaning any food, water, saliva etc would drown me. This had to be fixed immediately.
(R)enal – only one kidney
At 5 hours old I went into surgery and had my food pipe separated from my air pipe, and joined to my stomach (no link present before). This weakened the muscles and cartilage around that area meaning it was very difficult for me to swallow. In addition to that my air pipe was partially collapsed into a figure 8 so each breath was a struggle. I could not breathe lying down and suffered from horrible gastro-oesophageal reflux that I was constantly medicated for.
By 7 months old, I had my reconstructive surgery (PSARP) where they created a urethra, single vagina and anal opening. As they had to reconstruct my anus, there was no sphincter, muscles, rectum or nerves meaning I would be incontinent throughout my life.
A few months after my reconstruction, I had my colostomy and vesicostomy closures. I also began anal dilatation as otherwise the scar tissue would mean the opening was too small and not functional. This involved forcing hard robs into my anus to break it open so it would grow back bigger.
At 2 years of age I began breathing therapy to try and strengthen my air pipe. I had to dedicate at least 1 hour a day to this and was exhausted after each session.
I went in and out of hospital with urinary tract infections, pneumonia and chronic constipation (I do not have muscles in my intestine to push the food through), having over 50 admissions and 8 surgeries before I was 5. I was on prophylactic antibiotics to prevent my single kidney from being damaged by the recurrent UTIs. It felt like hospital was my second home.
Despite my extensive medical issues, I was always a happy child. My mother never led me to believe my condition was a bad thing, just that it was different. This helped me to develop such a positive perception on it today as it was just another thing I would get on with – I really knew no different.
At 14 I decided that despite my incontinence and many scars, I wanted to be a model. I went to a modelling school and learnt more about deportment, styling, hair and makeup, runway and more. I was determined that this is what I wanted to do in my life. I was told shortly after by a modelling agency I would never be able to show my scars, and therefore it was highly unlikely I would be able to progress very far in the industry. I sent my digitals showing my scars to modelling agencies that either did not respond or rejected me. I almost lost belief I would be able to ever do what I loved.
I was determined, having been brought up on the belief that I could do anything I set my mind to, regardless of my disability. I was frustrated that the scars would define me in the modelling arena I was struggling to even get into.
I never gave up hope, despite a huge setback, and went to a modelling agency casting at 16 – in bikini, scars and all – and was signed on a three-month development contract. I worked very hard, was always available and enthusiastic to do whatever jobs I could. I ensured that I used the skills I learnt at the modelling school to be a professional. I had a sense of gratitude that I brought to every shoot and runway as I knew how hard it had been to get there.
1 month in to my 3-month contract, I was offered a 12-month extension as the people I had worked with and my agency were impressed by how natural I was and my commitment.
I was so proud that I had come this far, I decided I wanted to write a book about the power of positive thought. I contacted a publisher and pitched my thoughts and they loved the concept. I was overly excited about the idea until I realized that there was no reason for people to take advice about success and happiness from a small-time model who I signed with a boutique agency in Brisbane. Knowing I wanted to spread a positive message, and not realizing that my disability could come in to my story I decided I had to set my sights on a bigger achievement to be taken seriously.
Fast forward a year, and I sent my digitals to an agency in Amsterdam ahead of a holiday there with my mum and godmother. I was invited to cast with them and landed an international contract after only working as a model for one year.
I stayed in Amsterdam alone for 2 months working and was cast for Mercedes Benz Fashion week that I walked the day before my 18th birthday.
In between all the joy and success, there were periods where my health did affect me. I had bowel accidents, blacked out at shoots and fittings, was in and out of hospital and still doing my bowel management that I began when I was one year old. Even though this took a toll on my physical health, I was so happy that I had achieved the (what seemed to be unreasonable) goal I set for myself of walking an International Fashion Week. I knew then that my mum was right – my disability did not have to hold me back and I really could achieve anything I set my mind to.
I came back from Europe buzzing, and traveled interstate and to Northern Queensland for modelling jobs. I was able to work closely with some great people in the Brisbane Fashion Industry and blogged a few events for Fashion Hub Queensland.
By 2017 my health was beginning to crash. I was in and out of hospital and had developed antibiotics allergies to over three groups of antibiotics due to overexposure as a child. I went in for three surgeries, one lasting over 5 and a half hours where they had to divide scare tissue and remove a 10-13 cm mass as well as my left ovary.
Having been held at the mercy of my health, I felt an urge to reach out to others with my condition and see how they were going. I joined some VACTERL groups on Facebook and got up the courage to post a snippet of my story in December 2017. I had an overwhelming positive response – over 300 likes, 150 comments and more messages than I could count.
I connected with someone in Melbourne who has the A of VACTERL (Imperforate Anus – IA) condition. He had bravely written a book about his experiences and began a foundation to support those with IA/Anorectal Malformation (ARM). He flew me down to Melbourne to be a part of the Resources and Development Team (RDT) where I was able to meet mothers of affected Children.
I knew in that moment I had to share my story as I had such a positive response from so many people. I began writing my book, finally, after almost four years. I wanted to share my life with VACTERL -the highs and the lows- to inspire and raise awareness for those in the community. “Behind the Smile: An Inspirational Journey from Disability to Ability” was launched in October 2018 and has had much success, with people across the world reading my story.
I have also been booked for a multitude of conferences throughout 2019 to share my story and advocate for those with chronic illness who do not have a voice or that platform I am very fortunate to have. In February 2019 I spoke at the 3rd International Conference in Shalamar Medical and Dental Hospital in Lahore, Pakistan. I have also been selected as a keynote speaker for the H.E.L.P Conference in Brisbane, Australia in August 2019.
Please be encouraged to contact me and share your story of living with VACTERL, IA, a rare or chronic illness as I would love to hear. Let’s inspire each other and continue to not be defined by our illnesses.
Love from Anja X
© 2019 Anja Christofferson & Courage to Shine™
Contact Anja through the following sites
- Contact Anja: firstname.lastname@example.org
- Anja’s Website: www.vacterl.com.au
- Anja’s Book: Behind the Smile: An Inspirational Journey from Disability to Ability
- On Anja Christoffersen – Model: Facebook
- On Anja Christoffersen – Instagram
- On Anja Christoffersen – YouTube
Online Stories of Anja